Sue's Story

For 20 years prior to 2008 I had a series of symptoms, some of which took me to the GP, others I just put up with. The former consisted of migraines, tiredness, weight gain, inability to lose weight, depression, hair loss, inability to cope with stress, biliary pain, eczema and heartburn. Those I didn’t trouble the GP with were brittle nails, loss of eyebrows, constipation, indigestion, night sweats, PMS.

My TSH and FT4 results in 2008 were announced as “normal”. I was referred to a cardiologist for a 24hr cardiograph, put on beta blockers, and told the ECG was normal. I was then referred to a rheumatologist for the pain in my joints and muscles. All tests were “normal”, and I was diagnosed with early stage CFS. The treatment for this was to be referred to physiotherapy and occupational therapy, so I could “learn to live with the pain”. At this point I exited the NHS system and began talking to people on forums.

Treatment:
My 24hr salivary cortisol tests (two in 2009 and one in 2010) told me I had a considerable adrenal problem. I treated this firstly with NAX, then with HC, then with Prednisolone, HC and NAX. I saw some improvement with this, whilst also taking Nutri Thyroid. As my health deteriorated again, I tried Westhroid (up to 3 grains), but this gave me migraines, and the more I took the worse I got. So I came off NDT, and tried T3. I had some success with this, and also booked in to see a different private doctor. He confirmed my approach, and we tweaked the treatment. I made good progress, having good days and not so good days. I still had to sleep in the afternoons, and manage my energy, but I was on my feet and in control of my own health.

I continued with the T3 (75mcg in 3 doses, 8am, 11.30am, 3pm), 5mcg Pred, plus stress-doses of HC (between 5mcg and 20mcg) and 4xNAX until August 2011, having seen a private doctor a couple of times in 2010. I felt generally ok, not brilliant, not bad, but considerably better than in late 2008. I still couldn’t tolerate any serious exercise, nor lose any significant amount of weight despite a good diet.

In August 2011 I caught up with a few interesting posts on a forum by Paul relating to early morning doses of T3.

I stopped the Pred and HC immediately. I felt just brilliant. Everything I’d found difficult was now easy – housework, shopping, ferrying the kids about.

As I was waking fairly early anyway during the summer, I tried this approach, just taking my first dose when I woke, anytime between 4am and 7am. After about 5 days I realised I wasn’t taking a nap through the day, and started to take notice of what I was doing! I fixed my first T3 dose (25mcg) at 4.45am, with 12.5mcg at 2pm and 6.25mcg at 6pm, and after about 4 days of steadily increasing energy, I hit what I can best describe as a “power band” of energy.

I stopped the Pred and HC immediately. I felt just brilliant. Everything I’d found difficult was now easy – housework, shopping, ferrying the kids about. I started to have ambitions, challenge myself and took up walking and weight training. My bowels were a joy (!), my digestion also, my mental attitude was so positive – it was, quite honestly, like a miracle. I couldn’t remember feeling this well, ever. Wow.

After about 6 weeks, I began to experiment with doses and timings. I also began to feel a little bit tired, and put this down to the exercise and the fact that my adrenals were still adjusting. Was I stressing them too much by exercising? Gradually I increased my T3 doses until I was taking 37.5mcg at 4am, 19mcg at 11.30, 12.5mcg at 2pm and 6.25mcg at 6pm. The tiredness increased, my blood pressure increased and I lost much of the energy I’d gained under this treatment.

After a big mental step back from the problem, I worked out that my energy levels began to dip when I moved my first dose earlier than 4.15am, and when I increased my dose. This, I realised, was because both of these increase cortisol levels powerfully and dramatically. I failed to recognise my symptoms as high cortisol, as they were exactly the same as hypo symptoms! The tell-tale was, and is always, rising or high blood pressure.
When I made a mistake I just went back to the last point of success, so I worked back to the timings and doses I first started on – 25mcg at 4.45am, 12.5mcg at 2pm, 6.25mcg at 6pm. Slowly but surely, my energy levels returned. Lesson learned – less is more.

Also, high cortisol will block T3 absorption, so you get screaming hypo symptoms. It was difficult make the decision to reduce T3 when feeling so hypo, but fortunately subtle, positive effects were felt pretty quickly (within a day or two), confirming the decision to reduce.

I’m now on 15mcg of T3 at 4.45, 12.5mcg at 1.15 and 6.25mcg at 6pm. This is a work in progress, but I’ve been significantly well recently. So I’ve held steady with this dose, even though it’s not yet low enough. I just want everything to settle down, adjust and stabilise. I think I need to be on 12.5mcg at 4.45am – my blood pressure is a little high and I get a bit achy about 4-6hrs after taking it the T3. Also, because I’m having to take half a tablet, plus an eighth of a tablet, sometimes the tablets don’t split accurately. As a consequence yesterday I ended up taking a bit more than 15mcg at 4.45am, and could feel the difference straight away upon waking. So you can see how sensitive the body is to this early morning dose, and how powerfully the adrenals respond. It’s fascinating really.

Anyway, my energy levels are currently consistently greater than when I was on T3/Pred/HC/NAX. I have a little way to go before I can confirm that my “power band” is back, but at least I know it’s achievable, and my body has the capacity to be fantastically well.